When a parent learns that their baby or young child has a hearing loss, they are often left feeling alone and unsure what to do. We've been there and done that with one Deaf child already, and we've just started the journey again with our newborn son. In addition, we learned our baby also has NEHI, a rare form of childhood lung disease. We hope that sharing our experiences will help inspire and encourage other parents of children with hearing loss or who may also have NEHI.

Thursday, July 8, 2010

Moving has proven to be more heart wrenching for me than I expected it to be. There are just so many things here that I am very attached to, and leaving those things behind is traumatic. I am very bonded and completely trust our ECI team. They are AMAZING people and have been the glue that's held me together more times than I can count.

We sat down today as a team to work on Liam and Drezden's plans for when we move. The new state has already said Liam will be able to attend an excellent program for kids 18 months and up who are hearing impaired three mornings a week. It's a HUGE blessing, but my heart doesn't even want it. I don't want someone else to take charge of teaching him, even though I know it's what is best for him. And, more than anything else, I don't want someone else in charge of my kids' services. We've had the same service coordinator since CJ was about seven weeks old. That's nearly seven years now. While building friendships with clients is very frowned on, seven years of being someone's rock has led to a great friendship with her. I can't even breathe when I talk about leaving and not taking Jo with us.

As we were working through Liam and Drezden's plans and acknowledging that all this hard work and planning will probably be put on the backburner anyway, I just sort of lost it. I'm so not ready to trust anyone else with these precious children. I know we're going to be so blessed for moving, especially in this aspect. I just had that the blessings have to be so bittersweet.

Tuesday, July 6, 2010

I'm pretty sure Liam is going to be my dare devil child. CJ was always very curious, too, and could get out of just about anything. This is a different kind of daring that I see in Liam, though. His is the kind that ends him up in the ER frequently. Isn't there some sort of speedpass parents can get for when they have children like mine who consider ER doctors and nurses to be like some sort of extended family?

We had a lovely 4th of July dinner of hamburgers cooked on the grill. Since we're in a tiny little apartment, we just have a tiny little grill. It's one of those $20 ones you can get at Wal Mart. Not even a little bit fancy. It stands about a foot and a half tall, cooks about 6 burgers at a time, and just does its job and nothing more.

After finishing eating, CJ decided he wanted to eat his cupcake on the patio. No big deal, right? Well, it shouldn't have been, but he forgot to close the door behind him and Liam toddled right on out the door. Because he's the most inquisitive and accident prone child ever to walk the earth, Liam had to make a bee line to the still hot grill.

Byron and I saw it happening, and it was one of those Twilight Zone moments where everything happens in slow motion. I dropped everything and flew out to him, but it still wasn't fast enough. Both hands and one fore arm had already touched the grill.

I quickly took him to the Acute Kids Urgent Care that was down the street and they sent him on to the Children's ER in Plano. The ER at Children's decided he needed to go to the ER in Dallas. ARE YOU KIDDING ME?!?! We all know how I feel about Children's of Dallas.

I fought and argued and disagreed with them. These burns aren't nearly as bad as the one he got a few months back. I knew he was fine, but they were adament that he needed to go. They wanted to send him via ambulance, but I put my foot down. No. Way. Is. He. Going. On. Your. Ambulance. He wasn't crying in pain, the burns were not above second degree, the swelling had slowed down significantly, and there was no reason to justify such insane measures. The doctor in Plano insisted that the swelling could get worse and he could lose his fingers. ARE YOU KIDDING ME?!?! Really, this wasn't half the burn he'd gotten last time. Really.

I finally relented and agreed to take him myself to Children's of Dallas so the burn people could look at it and tell me he was fine and just needed silvadene and treatment with the pediatrician. I also said they'd have less than 30 minutes to get him into a room of his own away from other sick children before I'd take him and leave. In my mind, the risks of being there far outweigh the benefits when you consider his health. They did do well. I'll give them that. He had his own room within ten minutes of arriving. That's all they did well in, but at least he was in his own space.

It took an hour or so for the burn specialists to come in. They took a few minutes to look at him and the conversation went something like this:

"How did this happen?" I told them the story."How many kids do you have?""Five""And, what do you think needs to be done here?""I think he needs silvadene, gauze, and to be seen by the pediatrician every other day or so for the next 7-10 days where the pedi will change the dressing and debride any blisters that have opened"."You clearly know what you're doing, and don't need to be here. Let's get him ready to go home".

Finally!! Someone who was reasonable enough to realize that I can parent my child AND that he didn't need to be in that nasty ER. That's where it ended, though. Apparently a child can't be sent home until a regular doctor sees him. Really?!?!? He's there for a burn so shouldn't it suffice that the burn doctor saw him and said he could go home?

Well, it was the 4th of July. It was getting late. Accidents started happening and the ER was filling up (which is why I didn't want to go there in the first place, but what do I know? I'm just the mom). Anyway, we waited and waited and waited. Finally a "doctor" came in who had psychology on her pretty white jacket. Great. They sent my kid a shrink because that's all that was available?? Really, I was ready to go home. Couldn't they just dress it and send us on his way? This is how the conversation with her went:

"Can you tell me what happened?" I told the story."I need a medical history. Does he have any history of illness?""He has a pre-disposition for C-Diff.""What's that?"SERIOUSLY? ARE YOU KIDDING ME?!?!?! At this point, I knew expaining NEHI would be more than a challenge, so I just dumbed it down for her so she'd understand."Does he need bloodwork do you think?""No, he's here for a burn.""Any fever?""No, he's here for a burn.""Any fever or coughing?""No, he's here for a burn.""What do you think needs to be done here?""I think he needs silvadene, gauze, and to be seen by the pediatrician every other day or so for the next 7-10 days where the pedi will change the dressing and debride any blisters that have opened"."Hmmm...let me go ask someone what we need to do"."Ok, but can you make it quick? The specialist said he's good to go, but we need you to sign it off.""Any sign of ear ache or anything?""No, he's here for a burn."

Yeah. It went that well. I'm not even exaggerating. I HATE that ER. (I think I've mentioned that before, though).

Anyway, we finally got to leave around 3am. I got home around 3:30 and had a total of three hours' sleep before having to get up and take him to the pediatrician who was only opened half a day that day.

Our doctor took one look and said, "They wanted to ambulance him for THAT?" He laughed. What did he do? He applied silvadene, dressed the wound, and asked us to come back tomorrow so he can treat the wound, debride the blisters that are open, and watch for signs of infection. Hmmmm...what a gret idea. Wish I'd thought of that.